My Fractured Family and Autism – Lessons Learned

This is part two of two posts on making tough choices, the blessing of having a supportive family, and the fractured family syndrome. Read part one here.

It’s taken me a while to write this part two of my “Fractured Family Syndrome” posts. As time passes from our Memorial Day weekend trip to Toronto — the stress of leaving Lil D at home during a difficult time, of stifling every fiber of maternal instinct that screamed “Stay!”, of realizing that it was as important to let my family help us as it was for us (husband, myself, and our younger two kids) to go and enjoy ourselves — all this now seems less acute, less crisis-driven.

We went, we relatively enjoyed, we returned, Lil D was well taken care of, and life has moved on.

But we are all changed for it.

As much as my family (my brothers and sister- in-law, my parents) was aware of Lil D’s current situation and the stress the entire family was under, they learned the tough truths when they converged to spend that weekend caring for him. It started with my wonderful eldest brother in Texas, who months ago offered to come here with his wife and daughter to care for Lil D. Soon after, my mom declared that she too wanted to help out that weekend. My other brother, whom Lil D is close with, then said he would drive down for a day or two.

As these plans were made, my plans were fluid. Would I go? Would I change my mind? Would things be too bad with Lil D for me to walk away? What would I do? As I wrote in part one, I turned to my husband to make the decision for me, and so we went.

A few days after returning, I had a conversation with my sister-in-law in Texas, who asked me, “Was it worth it? Did you have fun?”

Did I have fun? That’s a loaded question. Did we have fun? Why yes, we did – our two younger children had a blast, and so we did have fun. I certainly enjoyed parts of the break. I enjoyed the ease of the trip – it didn’t matter that dinner never happened before 10 p.m. or that parties went on until 2 a.m., or that the bride’s house was filled with people and noise and laughter and chaos – all things that would have been agony for Lil D to handle. I enjoyed letting my autism guard down (as much as I could).

But my thoughts were ever on home and Lil D.

Socially Impaired

This trip to Toronto made one thing glaringly apparent – my husband and I (especially me) have become socially impaired. We are losing our ability to have “normal” conversations, to have appreciation for small talk and other people’s problems.

We were both aware of this going into this trip. At the wedding, though we enjoyed dressing up and spending time with our extended family, we both found ourselves stilted in conversation.

At one point, as loved ones were giving their blessings to the bride and groom, I escaped to the bathroom and broke down in tears. Seeing the newly-wedded couple with their life ahead of them brought out such emotions in me: “Ya Allah, please let all their children be healthy. Please let them never have any major worries.”

It was hard to bring myself to “normal” wedding behavior – bright smiles, happy faces, well wishes, laughter with family, enjoyment with husband and children. Now, lest I sound too melancholy, it was an enjoyable evening, but these moments of grief stayed dangerously close to the surface, and I struggled to tamp them down. Later on I asked my husband why he seemed aloof, why he was disappearing behind his iPhone instead of socializing.

“You know what we talked about earlier?” he said to me, “about how it’s hard to talk to people? That’s what it is. None of these things (the small talk, the problems people were discussing , the comments about the food or décor or what people were wearing) seem to matter.”

That’s the thing when you become locked in an autism tunnel – or any special needs tunnel. It’s hard to see what’s beyond it. It’s hard to relate to people outside of it. But, as my husband and I realized, the minute we lose our ability to do so is the minute we have lost our ability to be part of the greater human race, and we do not want that to happen.

It Can’t Just Be About the Special Needs Child

People have commented to me that leaving Lil D and taking the other children to the wedding was the right thing to do, especially since we were blessed to have so many family members who were eager to spend time with him despite knowing that it would not be easy.

Over the years, I have come to accept this “fractured family” situation – that we cannot force Lil D to go everywhere with us, that there are times we must leave him at home so that the other children can fully enjoy an outing. And there are times that it is important for us to take him – to be together as a whole family and to teach him (and the other kids) how to navigate the unpredictability and unscheduled nature of life.

We pick and choose our times of being a fractured family. But, those times of family division are coordinated with times when Lil D is in a relatively good place with his autism. Going away over Memorial Day weekend, when things were in chaos with him, was a tough call.

One commenter, however, put this dilemma into sharp perspective:

“I’ve been in this situation, with six children. It’s wrenching, or retching, whichever term you prefer. But everyone needs to benefit from a difficult situation, whether it’s needing a break or needing to help the ones who need the break. I also think that as Moms and Dads, our neurotypical children need us as much as our not-so-typical children. In the same vein, our not-so-typical children need to learn how to lean on others besides us.”

Words of wisdom.

That in a family with a special needs child, parents need to also give time and attention to their other children is something I am well aware of. It’s a struggle, but I work hard to make sure my other kids get the best of me, too. But that our “not-so-typical child” needs to learn how to lean on others besides us – well this was a revelation to me.

In our daily life, we have certainly brought in a litany of help. God has blessed us with the means to get help, pay for help, and accept help. My in-laws stay with us for months at a time and support us greatly, my parents come as often as they can and have several times spent a weekend or week with the kids when I (or husband and I) went of town, and we have home therapists.

So, there are others who know (for the most part) all the nuances (and diets and meds and quirks) of caring for him. But until now, I had trusted no one (other than my husband) to care for Lil D during this SiB-ridden stage. In the past several months, so many things have wildly fluctuated with Lil D, and so many of his behaviors and habits have changed. I didn’t know if anyone else would be capable of handling him.

My eldest brother is the kind of guy who approaches anything with great thought and mounds of preparation. But there was no way I could fully prepare him for this weekend. I wrote the dossier and verbally went through all types of meltdown scenarios with him and how we handle it. But ultimately, I told him he’d have to figure it out along the way.

And though deep down I knew he would handle everything (with help from my mom and other brother), I doubted and fretted and worried. We left that weekend saying, “Insha’Allah (God willing) it’ll be fine. Insha’Allah Lil D will be just fine.”

These were words to placate ourselves.

It was a tough, tough weekend. The Sunday that we were gone was a day of nearly nonstop meltdowns filled with SiBs and aggression. My brothers spent the day using everything thing they could think of, everything I had taught them to end the meltdowns. In the end, Lil D going to bed was when relief came. That night in Toronto, we were driving to the walima, ( a reception given by the groom’s family), I spoke with my brother about how to devise strategies for the next day. As much as he wanted to spare me details, the little he told me had me in silent sobs.

That weekend was truly eye opening for my family. They had heard about what was happening and what effect this was having on our other children as well as my husband and me. Now they knew. They knew in such a deep and vulnerable way, that it changed them.

They learned what it was really like for Lil D and the rest of us during bad times. I learned that it’s ok to let my family see up close what my life is like, that sometimes you have to expose yourself for the sake of family love. It’s odd – through writing, I’ve come to share quite freely with you various intimate details of our life with Lil D and autism. But, if we were to speak in person or meet, I would show a positive front, I would not give all the details — not even to my family. But, there’s no hiding now.